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Hereditary hemorrhagic telangiectasia

Hereditary hemorrhagic telangiectasia (HHT) is an inherited disorder of the blood vessels that can cause excessive bleeding. People with HHT can develop abnormal blood vessels called arteriovenous malformations (AVMs) in several areas of the body

Prevalence

1-5 / 10 000

33,100-165,500

US Estimated

51,350-256,750

Europe Estimated

Age of Onset

All ages

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ICD-10

I78.0

Inheritance

Autosomal dominant

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Autosomal recessive

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Mitochondrial/Multigenic

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X-linked dominant

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X-linked recessive

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5 Facts you should know

FACT

1

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu syndrome, is a rare genetic disorder characterized by abnormal blood vessel formation, leading to arteriovenous malformations (AVMs) in various organs

FACT

2

HHT is typically caused by mutations in genes like ENG (endoglin) or ACVRL1 (activin receptor-like kinase 1), affecting blood vessel development and maintenance

FACT

3

Symptoms may include recurrent nosebleeds, telangiectasias (small, red or purple blood vessel markings) on the skin and mucous membranes, and potentially serious complications like AVMs in the lungs, liver, brain, or other organs

FACT

4

Diagnosis involves clinical evaluation, family history assessment, and genetic testing to confirm mutations associated with HHT

FACT

5

Management aims to control symptoms and prevent complications, involving treatments like laser therapy for telangiectasias, embolization or surgery for AVMs, and specific medications in some cases

Hereditary hemorrhagic telangiectasia is also known as...

Hereditary hemorrhagic telangiectasia is also known as...

  • HHT
  • Osler Weber Rendu syndrome
  • ORW disease
 

What’s your Rare IQ?

Which of the following findings is least likely to be seen in a patient with Hereditary Hemorrhagic Telangiectasia?

 
 

Common signs and symptoms

Epistaxis

Telangiectasia of the skin

Cavernous hemangioma

Cholecystitis

Microcytic anemia

Current treatments

Although current treatment cannot stop telangiectasias or arteriovenous malformations (AVMs) from forming, many of the symptoms and complications associated with hereditary hemorrhagic telangiectasia (HHT) can be treated or prevented.

Laser therapy

Hormone therapy

Surgical removal of AVMs

(IV) iron therapy